Beep’s Lupus Links
Santa Maria Lupus & Rheumatic Diseases Group
Santa Barbara Lupus & Rheumatic Diseases Group
Lupus Foundation of Northern CA
Wikipedia--Systemic Lupus Erythematosus
Lupus Association (NSW, Australia)
Lupus: A Patient Care Guide for...Health Professionals
Conditions which sometimes coexist with lupus:
Other important information for people with lupus:
Medications:
Lupus Foundation of America: Medicines
Medical Insurance:
Financial Help:
Disability:
Photosensitivity:
Advocacy:
coming soon!!!
Lupus
Systemic lupus erythematosus, or SLE for short, is one of a number of illnesses known as the autoimmune diseases. Every individual is protected from "invasions" of viruses and bacteria by an immune system—groups of cells in the blood and lymph system that circulate throughout the body and attack anything they recognize as "foreign." Without this defense system no one would live past infancy. In autoimmune disease, this system somehow becomes disordered, and an individual’s immune system begins to attack his or her own tissues.
--from the Lupus Foundation of Northern California’s (LFNC), “What Is Lupus” ?
How Do You Know If You Have Lupus?
Lupus is not always easy to diagnose. One reason for this is that it is a highly variable disease. Lupus varies extremely from patient to patient, and can also change greatly within hours, days, months, or years for any individual patient. Between patients, it can range from being a mild disease which needs only periodic monitoring by a health care professional, all the way to a life-threatening condition. It is also largely invisible. Some of the sickest patients often look well. In addition, complications such as weight gain coupled with the overwhelming fatigue which is a common lupus symptom can give the false impression of laziness instead of illness.
Diagnosis and treatment of lupus has improved greatly in recent years, so people concerned about possibly having lupus are strongly advised to peruse only up-to-date information about the disease. However, lupus remains a complex disease and much more research is needed to fully understand it and to find a cure.
It is recommended that someone who thinks they could have lupus consult with a specialist known as a rheumatologist, and to make certain the rheumatologist they see is board-certified and is also someone with whom they feel they communicate well and comfortably.
The choice of which doctor to see with is a very personal one, and a doctor who is the favorite of one person might not be the best choice for another. Unfortunately, many people are limited in their choice of physicians by insurance and/or financial restrictions.
There are many different symptoms someone with lupus can experience, but each individual patient has their own personal collection of which symptoms they have at any given time. Some patients experience only a few lupus symptoms over the course of their disease and others have more of a smorgasbord.
Some of the many symptoms of lupus are: joint pains, joint stiffness, joint swelling, extreme fatigue, pain in the chest when breathing deeply, headaches, fevers, skin rashes, anemia, butterfly-shaped red rash across the cheeks and nose, sensitivity to the sun or fluorescent/mercury/halogen lights, hair loss, fingers or toes turning red/white/blue in the cold, mouth or nose ulcers, weight loss or gain, mood swings, depression, difficulties with thinking, memory and concentration, blood clotting problems, kidney problems, seizures.
FYI, below is a list of links to sites with information about lupus and/or about resources for coping with lupus. Please be sure to always consult a licensed health professional before making decisions about your health or the health of anyone for whom you are responsible.
Don’t Forget...MAY is Now Lupus Awareness Month!
Yes, we know it used to be in October ! In 2008 it was decided to move it from October to May to coordinate with all lupus organizations throughout the U.S. as well as to incorporate World Lupus Day, which is May 10 of each year.
History of Lupus Awareness Month, Lupus Foundation of America:
“The first lupus awareness observance occurred in 1977 when President Carter signed Public Law 95-72 which declared September 18-24, 1977 as National Lupus Awareness Week. The week long observance was moved to October in 1982. The first month-long observance occurred in 1986 when President Reagan signed Public Law 99-365, designating October 1986 as Lupus Awareness Month.”
May is now Lupus Awareness Month in the U.S. and May 10th is World Lupus Day. The U.S. Department of Health and Human Services recently launched a national awareness campaign especially targeting young women. Learn MORE about this campaign. To download the Lupus Awareness Month logo, click here.”
More info:
Lupus Awareness Month, Lupus Foundation of Northern California, our sponsoring orgnanization
Lupus Awareness Month, Lupus Foundation of America
